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  1. Thread: Lesson learned

    by Ellie
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    30

    I love your idea of what counts as "fun" 🤣🤣🤣

    I love your idea of what counts as "fun"

    🤣🤣🤣
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    Just to educate you a bit more Matthew :D:D It...

    Just to educate you a bit more Matthew :D:D It often depends on your hospital as to what procedure you have and what feeding tube you're given, but knowledge is everything so it's good to know...
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    I definitely recommend the button feeding tube...

    I definitely recommend the button feeding tube David.

    They come in different internal lengths and widths, so you'll be measured and given the right sized one for you.

    I've the Mic-Key button,...
  4. Thread: Swallowing pills

    by Ellie
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    324

    In the meantime, try taking the Riluzole in a tsp...

    In the meantime, try taking the Riluzole in a tsp of thick yoghurt, jam, honey etc.

    Liquid Riluzole is much more expensive than its tablet form, so expect the GP to try fobbing you off but it is...
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    Oh the things we now celebrate :eek::D Is it...

    Oh the things we now celebrate :eek::D

    Is it a dual motor armchair?
  6. Thread: My future

    by Ellie
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    3
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    332

    You'll find another use for door handles, taps,...

    You'll find another use for door handles, taps, table edges and the likes - they double up as scratching posts :D

    I make sure my skin is well moisturised to reduce itchy moments and stay well...
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    Oh. My. Days.... How to make a girl feel good ...

    Oh. My. Days.... How to make a girl feel good :eek: :D :D

    I know what they mean - it's more straightforward to cut through thin fat layers.

    Best of luck.
  8. Gosh MMW, how awful for you - I'm sorry for...

    Gosh MMW, how awful for you - I'm sorry for your woes.

    Love Ellie.
  9. Thread: Bookworm Quiz

    by Ellie
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    222

    Nice one, Fiona!

    Nice one, Fiona!
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    Thanks Kate. Will the procedure be done with...

    Thanks Kate.

    Will the procedure be done with local anaesthetic or a light general?

    Love Ellie.
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    There is no such thing as "giving up too easily",...

    There is no such thing as "giving up too easily", just do what's right for you :)

    I go to the loo several times per day Hayls but I have carers, so, for me right now, it's very doable.

    I know...
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    Jojo, you need to consider yourself too - if...

    Jojo, you need to consider yourself too - if you injure yourself, you'd both be in trouble, your partner would have nobody to help him. and you'd be laid up with a back injury :( You're in this...
  13. Thread: Opinions please

    by Ellie
    Replies
    7
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    493

    Oh I can empathise! My jaw hangs too but my...

    Oh I can empathise!

    My jaw hangs too but my upper teeth overhang my lower teeth, so I only chomp my cheeks when I sneeze :) I wear a light gumshield in bed, which my dentist made, and I guess...
  14. Thread: Opinions please

    by Ellie
    Replies
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    493

    MND Connect are off until Tuesday, Matthew. ...

    MND Connect are off until Tuesday, Matthew.

    May I ask in the meantime - in what way are they driving you mad(I hope you're not in pain...) and are you talking about having all of the other 3...
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    Jojo, if he struggles getting out of bed, would...

    Jojo, if he struggles getting out of bed, would your partner consider getting a profiling/hospital bed?

    I know they're not everyone's cup of tea - I resisted for a long while myself!! - but...
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    The length of time to get a diagnosis varies...

    The length of time to get a diagnosis varies widely Matthew, as there are several contributing factors to the whole process, such as symptoms, waiting times for consultant and diagnostic tests, the...
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    Thanks for that. Are you happy with how it...

    Thanks for that.

    Are you happy with how it turned out?
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    Great to hear that, Miranda. Do you have the...

    Great to hear that, Miranda.

    Do you have the free version or did you upgrade and customise?

    As an FYI to others, it's also available for Android.

    Love Ellie.
  19. Thread: Breathing

    by Ellie
    Replies
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    471

    Oh Arta, how utterly insensitive of that lady to...

    Oh Arta, how utterly insensitive of that lady to say what she said, when the reality is she hasn't a clue about your prognosis :mad:

    The great news is your lung capacity hasn't deteriorated in 5...
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    Hi Matthew and Welcome to a forum nobody wants to...

    Hi Matthew and Welcome to a forum nobody wants to join...

    Ordinarily your speech & language therapist (SLT), assistive technology service (AT or AAC) would be a good source for info and devices...
  21. Thread: Teeth Brushing

    by Ellie
    Replies
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    742

    Aww, but that's the fun bit Miranda :D:D:D

    Aww, but that's the fun bit Miranda :D:D:D
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    Oh I'm glad your Wingwoman is going with you...

    Oh I'm glad your Wingwoman is going with you tomorrow :)

    Yes, things do move quickly at first - so many disciplines to meet for baseline measurements etc., then it eases off.

    No I didn't get...
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    Oh yes, the first few appointments can be hard...

    Oh yes, the first few appointments can be hard Andrew and particularly because you often see people who are much more advanced than you are and the reality hits you like a ton of bricks - be...
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    I won’t keep badgering you after this :rolleyes:...

    I won’t keep badgering you after this :rolleyes:


    Oh, I didn't realise you were on a neurology ward with an MND Consultant, perhaps the hospital is one with an MND Clinic (MND Clinics are part...
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    Then why don't you get the full EMG reports and...

    Then why don't you get the full EMG reports and go to an MND Clinic where they know MND, it's their expertise. If it does turn out to be an MND, you'll be in the right place.

    Depending on which...
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